I was diagnosed with APS 3 years ago after a massive PE event. Despite being stable at supposedly therapeutic INR levels (2-3, ideally 2.5-3), I have been diagnosed with another large DVT which has developed in the same leg the last one did. My target INR range has been increased and I'm on Clexane until stable at INR 2.5-3.5 (ideally 3-3.5) on direction of hospital haematologist.
Beyond that getting information/advice has been like pulling teeth. I feel a bit like waiting for the axe to fall, hoping this DVT doesn't migrate anywhere before the drugs deal with what they were supposed to prevent occurring in the first place!
So, I'm very keen to hear from anyone who has had a similar experience.